IACC announces the goals and key questions for autism research

The Interagency Autism Coordinating Committee (IACC)is a body that advises the US Secretary of Health and Human Services and coordinates all efforts within Health and Human services that pertain to autism spectrum disorders. As such, the IACC (1) develops and annually updates a strategic plan for ASD research, (2) gives a yearly summary of the advances in ASD research, and monitors federal activities related to autism. In short, when the IACC speaks, ASD researchers around the world listen.

For 2011, the IACC have outlined the following 7 questions as key to understanding autism and helping families:

1) When should I be concerned?

2) How can I understand what’s happening?

3) What caused this to happen and can it be prevented?

4) Which treatments and interventions will help?

5) Where can I turn for services?

6) What does the future hold, particularly for adults?

7) What other infrastructure and surveillance needs must be met?

After identifying areas of need, each area’s goals and research possibilities were outlined to encourage more research studies on the topic:

1) When should I be concerned?
Goal: Children at risk for ASD will be identified through reliable methods before ASD behavioural characteristics fully manifest.

Researchers are charged with developing valid and reliable screening and diagnostic instruments that are easy to administer,
detailed criteria for specific ASD subtypes, biobehavioural markers for ASD, and protocols for genetic testing. Furthermore, they should
explore barriers to the use of screening and diagnostic processes in minority populations.

2) How can I understand what’s happening?
Goal:Discover how ASD affects development, which will lead to targeted and personalized interventions.

We can increase our knowledge by doing multidisciplinary, longitudinal biobehavioural studies of children of children and adults that characterise neurodevelopmental and medical developmental trajectories across different ASD categories and identify risk factors, co-occuring symptoms and potential targets for intervention. There should be research on the underlying biology of co-occurring syndromes or conditions. There should be more research on females with ASD, individuals who are non-verbal or cognitively impaired, and the strengths and abilities of people with ASD.

3) What caused this to happen and can it be prevented?
Goal: Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.

We can increase our knowledge by doing more genetic studies, family studies of the broader autism phenotype, and research into environmental influences.

4) Which treatments and interventions will help?
Goal: Interventions will be developed that are effective for reducing both core and associated symptoms, for building adaptive skills, and for maximising quality of life.

Researchers should do large-scale studies that directly compare interventions and combinations of interventions (e.g., pharmaceutical, educational and behavioural interventions) to identify what works best. Novel interventions should be sought and ways to measure changes in the core symptoms of ASD investigated.

5) Where can I turn for services?
Goal: Communities will access and implement high-quality, evidence-based services that maximise quality of life across the lifespan.

Researchers and government should develop and share evidence-based community practices for ASD;develop a coordinated, integrated and comprehensive community-based service delivery system; and examine the availability of services for people with ASD.

6) What does the future hold, particularly for adults?
Goal: All people with ASD will have the opportunity to lead self-determined lives in the community of their choice through school, work, community participation, meaningful relationships , and access to necessary and individualised services and support systems.

Longitudinal studies are needed to understand the needs of individuals with ASD, and their families, during critical life transitions and track risk and protective factors. There should be increase coordination between government and local delivery systems.It is important to include people with ASD and their families in the planning, implementation and evaluation of research.

7) What other infrastructure and surveillance needs must be met?
Goal: Develop and support infrastructure and surveillance systems that advance the speed, efficacy and dissemination of autism research.

Data sharing between researchers, and information sharing between researchers and the public, is encouraged. Research institutes should set up banks of biological information for potential future diagnostic use and monitor the prevalence of ASD.

Although these goals are not meant to be accomplished within one year, it motivates researchers and government to do research on areas that are either under-researched of not yet fully understood.

How does UCT’s research fit into the IACC’s strategic plan?
UCT is currently doing research in three main areas: basic (exploratory) research, assessment of screening tools for ASD, and assessment of the effectiveness of specific interventions for ASD.

We aim to:

(1) increase knowledge regarding the different diagnostic categories within ASD (social cognition, bonding and spatial navigation projects),(2) investigate the strengths and abilities of individuals with ASD (spatial navigation research),(3) examine the validity and cultural reliability of screening tools in the South African population,(4) examine the efficacy and appropriateness of behavioural and social intervention for South African children (Early Start Denver Model research), and(5) teach parents/communities to deliver behavioural intervention themselves (Early Start Denver Model research).